Within a couple month of my introduction to the world of TBI (traumatic brain injury) my family doctor did not mince words. His comment was something to the effect of, “Welcome to the likelihood of early onset of dementia.” That was a reality check for me. Those were not encouraging words at a time when I was dealing with ongoing headaches, serious memory issues, troubling side effects of being in social settings, sleep issues, and more.
How likely is early onset? Is early onset in the context of brain injury an avoidable reality? Those thoughts came back to me at various times in the past seven years. It also raised the question as to why this was a likely outcome of the brain injury. Was it an assumption based on data?
There is reliable information about the effects of repeated head injuries of professional football and hockey players. There would be a difference between repeated head injuries and a one time TBI event.
In looking back I have come to realize that the level of inflammation in the brain was my clearest indicator of how well my body was adjusting to living with ABI (acquired brain injury).
When there is inflammation in the brain, the area of the brain that is inflamed is not receiving a healthy level of oxygen. When an area is chronically deprived of oxygen the area starts to degenerate and lose functionality. That is not a helpful pattern when one is looking for healing and restoration of various functions.
Immediately following my injury I experienced a headache on a constant basis. The only thing that would change was the intensity of the pain. Over time, probably around 18 months, the headache became intermittent. The change to intermittent was a promising improvement.
After about two years I found myself without a headache for longer blocks of time. When a headache would return I found it disheartening. Gradually I became aware of the link between my headaches and the activities I was doing.
There were certain activities that would bring on a headache. One situation stands out very clearly. I had been put through three evaluations within a two week period. One evaluation was at my request, a full day neurological assessment. The other two were demands that the motor vehicle insurance put on me. One was a two hour assessment by a third party ordered and paid for by the insurance. The intent of the assessment was to report back that I no longer needed professional injury recovery support. The third assessment was a full day appointment to determine the level of physical, mental and quality of life loss I had experienced as a result of my injury.
All three evaluations were cognitively demanding. Not good when one’s brain has been injured and is still healing. In addition, since each evaluation was a ‘high stakes’ event there was a heightened level of stress.
Concerning Side Effects of the Assessments
On my health appointment, within a couple weeks of the three assessments, a note was made that the level of inflammation in my brain had increased. I recognized the type of head pain I had been experiencing recently and realized that it could serve as my gauge to recognize when the inflammation in my brain had gotten worse.
Being able to make a link between the type of head pain (a feeling of pressure from all sides) and the increased inflammation was very helpful. In the following months I could recognize when the level of inflammation was increasing or decreasing. I could then modify my activities and the intensity of my activities to better manage myself.
About 4 years out from my initial ABI, I was told that there was still a troubling amount inflammation in my brain. While the level of inflammation was not registering on my headache ‘scale’ it was still a concern.
Despite taking various vitamins and minerals as well as keeping physically active, the level of inflammation was not being reduced to an acceptable level. Actually, the truly acceptable level would be zero inflammation.
The Lowest Point
About four months ago (three years after the report that a certain level of inflammation was still present), my health professional pointed out that my level of inflammation had decreased by over 90 percent in the past twelve months. This dramatic reduction in inflammation coincided with the eight months of Listening Therapy I had completed.
The dramatic decrease in inflammation corresponded to my dramatic increase in memory and my executive functioning. The details of the Listening Therapy and how it impacted my daily functioning can be found in a series of 6 blog posts beginning with Tiniest Muscle with Real Pull (part 1)
As I look back over the past 7 years I now have a different interpretation of my ability to function. I no longer agree with my original assumption that it’s difficult to function properly when I have a headache. Instead, it’s difficult to function when I have an increase in inflammation in my brain. The inflammation affects my memory, my cognition, my emotional vulnerability and my energy level. The headache is simply the gauge, not the cause.
My inflammation low point became my emotional high point.
Early Onset Risk or Not
I have no idea what my level of risk is for early onset of dementia. However, I am reasonably assured that the dramatic reduction in inflammation in my brain had dramatically lowered my risk of early onset. With the drastic reduction in the level of inflammation, that area of the brain is receiving a higher level of oxygen which is critical for brain health.
I’ve concluded that my choice of activities can have a direct bearing on my brain health. While that is probably true for anyone, since my brain injury I find myself more susceptible to stresses and demands being placed on me.
Since my injury I have focused on finding activities that are less likely to exacerbate my vulnerabilities. Given the unpredictable nature of my ability to function in the first few years, I was not able to commit to anything that followed a strict schedule. For example, to volunteer on a particular day each week was not a workable option. The stress and disappointment each time I was not able to keep my commitment would add unnecessary stresses.
I have meanwhile found one activities that does fit well. I have found cycling to be a very good fit. The level of exertion I could put into it seemed to reduce my post traumatic symptomology. The noise of traffic and the risks of sharing the road with cars and trucks did not seem to be a problem.
Increased Commitment Level
In the past two years I have found gardening to be an activity that fits very well with the ups and downs I experience. I have successfully kept a half acre of vegetables in a satifyingly productive state. The rhythm of gardening had been a great fit. Being out in the early morning around sunrise is definitely the most relaxing activity I have found. If I’m recovering from a set back, the garden can do without my help for a couple days. Having accepted that, I find gardening helps me during my recovery periods. During recovery times I need something physical, non-strenuous and repetitive. Well, hoeing and weeding fits that bill very well. I can set my own pace and how long I do the activity. There’s always some area of the garden that could use that kind of attention.
When I was six years out from my ABI I agreed to take on a volunteer scheduled multi-year commitment. I am now one year into the commitment. The work has involved following a schedule, doing some advance planning and following up on things in a timely manner. At times the unexpected stresses that accompany the volunteer work does set me back. At times it takes me three or more days to recover and function effectively again.
At times I wonder whether it’s worth the setbacks. When I find myself wondering whether to continue I consider two key factors. First of all I consider the satisfaction that I get out of the volunteer work. Second, I need to be able to see a way forward. Yes, I can expect to go through recovery times, but then I need to think of the cost benefit. When the cost / benefit tips the wrong way then I know it’s time to make changes. The changes might be adjusting things with the ongoing commitment or it might mean finding a different volunteer activity.
However, I don’t see my recovery time as lost or nonproductive time. I have the gardening which give me the satisfaction of doing something worth while. The recovery time also give me time to contemplate and take personal stock of what keeps me busy as well as the goals I have set for myself.
By being pushed from time to time into a space of taking stock, I avoid the misgiving of just blindly moving along. Meanwhile I will stay alert to my long term health and monitor my level of activity based on my ‘headache gauge’.